I had numerous phone calls with the new nurse practitioner, Devon, about the headaches and whether we needed to bring Cole in for test to determine if he was having a malfunction. She was great about following up with me and asking lots of questions. Given the head aches onset quickly and then stopped we decided to wait and just track the frequency and duration. There is a test called a shunt series that will determine if a shunt is malfunctioning, but they were worried if he wasn't having symptoms that the test wouldn't catch the problem. When we walked in to the appointment and I saw Devon I immediately realized I knew her. I looked at her and said, "Children's Hospital, 2009, Neuro Floor, yes?" She looked at me dumbfounded and said, "I did work there then, why". I told her that she was Reagan's nurse for several days both before and after her brain surgery. I told her how much we appreciated everything she did for us then. She felt terrible because she didn't recognize us, but as we were leaving she apparently looked up Reagan's chart and did find her notes from several days during Reagan's stay. She seemed very happy to hear we remembered her. Small world!
We also had a follow up appointment this week for Cole with Dr. Jeffries, his opthalmologist. We go every six months with dilation every year. It was another frustrating appointment and yet another good learning experience. I prepared Cole for what to expect, but they insisted on doing the vision test starting from the furthest point (sitting in the chair) to see how well he could read the pictures on the monitor on the far wall. Unfortunately because it's so hard for him to see he gets very frustrated very quickly. After some coercion we moved him more than half way to the monitor and were able to start getting him to focus on the task and complete the exam. There was a second exam/machine that required him to put his chin on a shelf, his forehead against a bar and look into a small hole at a picture. Unfortunately we were not able to get him to complete this test and will try again at our next appointment. Hopefully I will be able to convince them to start closer to the monitor next time to prevent the frustration and meltdown.
As his mom, I worry about how he's going to get to work if he can't drive. Where he's going to have to live to have access to a bus or a metro. I worry about how he will take a girl on a date. I worry about how he will take his kids to Tae Kwon Do practice. But I try to remind myself how lucky we are that he is here. I try to remind myself how luck we are that he has any sight. And although I know we have so much to be thankful for, it's still so very difficult to feel like your child will have so many more challenges than most kids. But we take it one day at a time, we advocate as best we can, and we try to realize how far he has come. And it is so apparent in this side by side picture! It was recommended that our next step is to see a low vision specialist to start learning what tools and resources are available to people with visual disabilities. I called and made an appointment with Dr. Alibhai at Low Vision Services in May and look forward to making new connections. I will post another update next week after meeting with the Neurologist!